Many of you followed the blogs that were posted by my team on walkforchromosome6.blogspot.com. The team wrote summaries of my adventures, and even posted short videos made from the photographs that I shared with them. I hope you enjoyed these. I want to thank Aafke, who wrote the Blogspot and Facebook updates, sent out messages on Twitter almost daily, and kept track of the amount of money raised. Aafke also arranged the Dutch newspaper and radio interviews. Suzanne made the movies, Timme made the cartoon and logo, and Pauline kept you informed via the C6 Facebook page. A big thank you to all of them!
Of course, I am very disappointed that I could not complete the promised 1200 km, and that I was not able to reach Santiago de Compostela due to a nasty and very painful case of tendinitis in my ankle. I tried everything to get rid of the pain, including a halfway rest of three weeks, cooling, massage, strong anti-inflammatory medication, and painkillers. I even tried wearing other shoes. On my last day of walking, it took me 7 hours to walk 18 km. Every step hurt. At that point, I decided that I definitely could not continue. It was a very difficult decision, but I knew that I could always come back and do the remaining 400 km in a three-week holiday.
So, my camino did not go the way I had expected. I constantly had to change plans, adding days of rest, shortening distances, seeking doctors for advice, adjusting my goals end expectations. But, that is life. Families with a chromosome 6 child experience the same thing. Nonetheless, the 790 km I walked were worth every step. I enjoyed nature, culture, weather (when it did not rain), and lots more. I met incredibly kind and helpful people. At the end of the day there was always a bed (sometimes even with sheets!) and a meal. And guess what? The slower you walk, the more you see.
In the end we raised 7,124 EUR (7,991 USD). Although we did not reach our primary goal of 12,000 EUR, this is still a lot of money. Considering that I walked 790 km of my 1200 km goal, I am therefore very happy with the amount we raised. Moreover, we also created a lot of awareness. Within the Netherlands especially, there was great interest for the fundraising initiative and for the Chromosome 6 Project, reflected by the fact that most money was raised within the Netherlands.
Could we have done better?
We informed (or tried to inform) the press in France and Spain, the countries through which I walked. However, they did not seem to be interested. The team was active on Twitter, Facebook, and LinkedIn, and everything was posted in English. The project was even announced at the European Genetics Conference and word was spread within our international professional networks.
We have to conclude that it is extremely difficult to raise money for a rare disorder. It is not easy to inform the general public about what a chromosome disorder is or why increasing knowledge of these rare disorders is important for patients and their families.
Still 400 km to go
But we are not giving up. I still have 400 km to walk in order to reach Santiago de Compostela, and I will do this as soon as my ankle has fully recovered and my work at the hospital allows for a three-week break. We will continue to create awareness and try to raise more money. We know that the 120,000 EUR needed for the fully interactive, self-learning website that we want to develop is not within reach, and other funds need to be found for that. But hopefully we can achieve the 12,000 EUR needed to employ a student to analyse the information we have collected thus far, and to communicate this information back to the families.
If you have ideas for us on how we can improve the fundraising project, please email these to chromosome6@umcg.nl We are grateful for any suggestions you have.
As I explained above, walking along the Camino was a wonderful experience for me. Walking for 42 days also meant 42 different beds to sleep in. You will find a short impression of that in the photographs below.
With best wishes,
#ProfessorConny
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